Caregivers need the help of legislators

Editorial| Island Voices

Originally published by the Honolulu Star-Advertiser on January 8, 2017. Read it there.By Dr. Cynthia Goto

I watch my parents with a deep sadness as the sun sets on their long and useful lives. My mother, 85, once a nurse, has just joined my father, 95, once a doctor, on the terrible journey with Alzheimer’s. I used to be a partner in my father’s OB/GYN practice. Now I am a partner in helping my parents manage the pain of their decline. I feel lucky that as a doctor, I can make a significant contribution to overseeing their care.

My father’s hospice services are covered by Medicare. Their ongoing daily care is not — and it is expensive. Fortunately they can still afford to pay for 24 hour caregiving assistance.

I often wonder how other families manage. I hope our legislators are wondering too. Every one of our elected representatives must have someone in their immediate or extended family who is struggling with caring for their aging loved ones. Self-interest, if not a sense of moral urgency, should prompt legislators to begin to address the growing challenge of seniors unable to fend for themselves.

Some will say that we should not look to the government to solve all our problems; that we should each plan for our later years. And they are right. But life is neither simple nor predictable. The people left coping with life’s surprises are more often than not, the women of the family.

Among my patients and my friends and family, I see many other women in my situation: struggling with the emotional toll of caring for their elders.

For many, the toll is also financial, as they cut short their careers and deplete their savings, trying to do what is best for their family members.

As they become consumed by the demands of caregiving, I see how they juggle the multiple roles that fall to women, taking on more and more while doing less and less to care for themselves.

Patients will tell me they cannot come to an appointment, for instance, because the grandchildren have just been left in their care. Women are the connectors that bring and hold families together. They provide a largely invisible, and not fully acknowledged infrastructure for family cohesion for which they are not compensated financially. The more stress we put on that family infrastructure, the more fragmented and insecure families become.

This is a societal problem, not just an individual challenge. Sooner or later, each of us will face that challenge.

As a community, we have not done a good enough job of anticipating the needs of seniors. But it is never too late to start. Let’s not let the perfect be the enemy of the good.

Legislators can start by creating some form of public assistance so that family caregivers — most of them women — get some respite from their labor of love. Neighbors can offer a ride to the hospital. Friends can bring a hot meal. Family members can take turns carrying out the multitude of little tasks that help keep things humming. It takes a village.

Involve the seniors wherever possible. This Christmas, I had my mother help me fold napkins for the table. I asked if there was anything missing in the preparations. “Yes,” she said. “Candles. We always have candles.” So my nephew went in search of candles. On another occasion my mother asked me who I was. When I said my name, she responded: “I have a daughter by that name.”

We take each day as it comes, the tears along with the joy of catching a glimpse of our loved ones in the shell of the persons we now care for. We can do more to help alleviate the pain. I pray legislators appreciate the urgency and take that first step forward.